What would our loved ones say about us if they had a forum of their own?

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What would our loved ones say about us if they had a forum of their own?

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Leonora Carrington, a Surrealist painter/writer, wrote "The Hearing Trumpet". It's about a woman who goes to a very surreal assisted living facility. The therapist there explains to her a condition where people "open psychic doors for New Truth". Toward the end of the book the main character says "We have to watch the workings of our own nasty nature". The book is mostly hilarious, but its fiction is also very descriptive of dementia. I think my mom knows that she is sometimes being very mean. While she doesn't remember what she said, she does remember that it felt bad to say it and she apologizes.

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Lucky you!

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I was extremely fortunate. My LO's praised me to everyone.

With my father, I had to pull back and remember how it felt to always be told what to do as a child. I didn't like it. So I turned myself around and told him that if he needed me, I was there. I told him to do things the way he wanted and if it didn't work out, we would find a viable path together. Worked like a charm.

With my DH, I thought about how I'd want to be treated - and that is how I treated him.

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Excellent advice.

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" She shouldn't worry about me!" Said while blowing off a neuropsychological follow up appt. because she was buying herself an overseas plane ticket!

This actually happened.

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Jennett419, I am very interested in your perspective. From your perspective, what would you say is the fine line between "helping" and "helping too much?" I think most family caregivers, certainly myself included, struggle with when to help and when to "butt out." We want to help, we are more than happy to help, but we are also worried about appearing negligent if we don't help. And for many of us, the criticism from other family members comes regardless of what we do: we are either helping too much ("taking over", "being bossy," "treating our parents like babies") or not helping enough ("Don't you think they could use some help?", "Why are you letting them do that?"). Aside from being caregivers, we are apparently supposed to be mindreaders, too. I hate to see my parents struggle, and some of the times it seems like the decisions they make are not that wise. I am more than happy to help them, but they usually don't want help until they are in a jam. I have backed-off considerably since being told, "No one asked you to be here," but it's difficult to sit and watch the house fall down around them.

You're a brave person to be part of this forum. I'm not sure it's wise for you to read all the griping that goes on here; but like others have mentioned, many caregivers really have nowhere else to go for support and to air their frustrations.

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I had the nerve and just asked my mother what she would tell about me. The first thing that came to her and she insisted very much about is : "she's always working". Then she added : "she's always doing something and taking care of everything. I wish she would work less for me because I'm a big girl and I can take care of myself" (That she can take care of herself is partly true because her case is not too pronounced yet. For instance, she has forgotten that a long lasting friend of hers just died, but remembers me and still knows that her home is her home. Let's be optimistic : I'll take the fact that she thinks she can take care of herself not as proof of denial but as proof that my help isn't too obstrusive and prevents problems she can't really realize since I help (she never gets lost for instance, since I moved in with her and I'm always here to guide her). So, in fact, this not-needing-the-caregiver-so-much crap is a huge compliment ;-)

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My father summed it up eloquently before he passed away this year.
He said (exasperatedly), "How many times do we have to go through this? "
That still makes me smile.

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After he got his hearing aids, Dad told me I was loud.

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Hilarious!!!

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Having just gotten over 6+ months with cancer and receiving little to no help from my kids---I know how it will go down. I will HIRE help and expect nothing from the kids.

My son, whom I spent Tgiving with last week made fun of my bald head. It was mean and unnecessary--I cannot HELP that my hair all fell out. I just got up from the couch and said "I didn't raise you to be mean to sick people. You enjoying this?"

No response and certainly no apology.

In fairness, I never really asked for help. Any time my daughters came over they brought little ones with them and I had zero tolerance for noise. And I didn't ASK for help, so anything I feel about being neglected is all on me.

What will they say about me? "Mom sure is a pain".

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Bald is beautiful! It's a symbol of your courage.

Your kids will say Mum is so stoic. Doesn't make a fuss. A real fighter. She's been an inspiration to us - & we've been about as caring as a lounge of lizards.

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I was quite fortunate that my parents were thankful for the ways in which I helped them. Mom was quite expressive to her CNAs about her gratitude that she felt toward my efforts. She would often say to me (when I expressed doubts in myself) that my efforts were far better than anything she could do. Dad knew that I was his champion as he went through various medical challenges.

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My husband would (and did) tell other people, when he could still talk:

"I'm content to let her take care of everything."
"You should ask her about that. She knows everything."

And to me directly (and he still does at odd moments):

"I love you!"
"You are beautiful!"

Yes, I know how fortunate I am.
"I just want you to be happy"

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Wow I wish my mom was that nice. I’m the oldest & only girl.. She stares/glares at me like I got shit on me, and will refuse to say I love you when I say it to her. This can be so devastating disheartening., but Still I Rise.
I have three very adult younger brothers who are like gods to her but they very, very seldom visit when I talk with them they seldom or it’s a last thought as to how’s mom doing......

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My mother, in advanced progressive dementia and in permanent care, is so unpredictable it would depend on the time of day and how many triggers had infiltrated her consciousness earlier.
These are just a choice few contributions my mother would, and often does, make:
1, "You are all a bunch of mongrel bloody bastards! You have no idea what you are talking about." "Lying'' might get added to that phrase occasionally. This is pretty much an Australian term with a host of meanings, but in this case it would be mostly derogatory.
2. "I don't see why everyone fusses over me, I can look after myself." Wheelchair bound, incontinent, cannot even decide whether she would like a hot or cold drink for refreshment, can no longer write, read a newspaper, mostly has to be distracted by one carer while another shovels food into my mother's mouth.
3. "There must be someone who can look after me, I need help right now." Mother is in a resort-type aged care facility, albeit in secure memory care unit, plenty of staff to attend to her every whim or need.
4. "Call the police. We are being held hostage, we are locked in this little building, we are in lock-down, we are being starved, we have no water." Lovely double storey building, beautifully decorated single rooms and ensuite for every one of its 120 residents. Staffing ratio of 1:5 residents, sometimes even 1:4.
5. "They make me sleep on the floor, can someone report them please." Mother kept falling out of bed so now has a bed which can be lowered to floor level, has thick crash pads either side of the bed, and simply rolls out and down no more than about 8". Sometimes she IS left there to cool off, she hates the sling lift now, does not feel safe and will throw anything she can to keep carers at arm's length.
6. "You wouldn't believe what goes on here." "They are up to their old tricks again.'' "They talk about me in their own lingo." We have yet to work these ones out.
7. 'This is my daughter, she's fat!' or in my case, 'This is my daughter, she is old and fat'. Talk about stating the bleeding obvious.
8. My favourite is mother's response to staff when they question her about why she does not like men. (This dislike is something new I might add). Her classic response is always 'they want to fiddle with your bits!'

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Thanks for posting this, even though it was my father that had dementia, my mother always has and will continue to say negative things about me and you listing your mother's probable comments made me cheerful, it sounds like I am not the only one, and I needed this....all I can say to you is, 2 minutes, 2 hours or 2 days...that's how long I stay away depending on the comment I get. It seems to get the point across, until ...the next time, but I least I feel like I am not being berated as much as before, it might work...maybe.

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It would mostly be no sense

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Said my late mother - "I'll pack your bags; you're going home." Really?! Not so much. I'm here to take care of you.

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I think and hope she might say/feel that when she has a request for a need whether it be stamps(she is really into keeping up correspondence),Depends,toiletry items,applesauce,address labels etc. that I am right on it. She does thank me for these things.

Although there might have been some resistance in the very beginning at entering AL she did realize the need she had for it after a fall and communication with hospital staff that she should not be living alone with her various medical ailments.

She was greatly relieved for us when we finally had the sale of our house in NY as were we. I admit there were times prior to this when I was stressed and could not always hide that. She also has been concerned with the various ailments my husband and I have endured this year which I try to downplay. All in all I am fortunate to have her aging in a gentle although definite manner and I truly feel for all those here who experience great difficulties with their parents.

She was not the easiest mother to have had while growing up but we are in a place presently that is fine.

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As told to me today by a 94 yr old lady - when I asked how she was.

"I'm hanging on. That's what I'm doing. Hanging on tight. Oh I know they all want me to go, that I should let go but I WON'T I just WON'T!" I replied "Good for you!" What a dear.

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Our family was extremely lucky. My mom was loving and giving all her life so when she chose to go on Hospice we told her we would support her the best we could. Mom had lost the strength to stand up on her own, or even adjust her position in bed. I live nearby and chose to move in with my parents to support both of them (Mom 91, Dad 92). Two days later my fiancè came to spend the nights in order to help out with midnight potty calls, etc. My sister came over in the afternoons while I was at work. Mom lived just one month after starting Hospice and was quite lucid until we had to increase the morphine at the end. It was just long enough to prepare emotionally and not get burnt out.

She expressed to us how grateful she was to have us taking care of her in her own home. When she snapped at us because she got frustrated or scared, she would later apologize (like she always did). It amazed me. She was going through all this; she was dying, her body was failing, and she was apologizing to us for being grumpy!

My dad received most of the scolding, "no, no, not like that, the other way!" (probably because he was most important to her.) He and I would exchange glances and understand that she was just scared and frustrated. How lucky were we to have a team of caregivers!! My heart goes out to those of you who struggle alone with these situations.

After she died, a friend of mine who happens to be a psychic medium, received messages for me from my mom. Many of you may not believe this and that's ok. A few years ago I didn't believe this was possible either, but I've known this friend for about 10 years and found her to be very level-headed, she just wouldn't make this stuff up. She received many messages for me from my mom... "someone should take your father out to eat, a meal, not just a sandwich." "Tell him to spend his money! Fix up the house. Just do it!" "Yes, your brother-in-law was snippy with you the other day. I don't know why he gets so full of himself!" "Get someone to help you move those boxes for the church." (She always worried about my back problems.)
But the one that really struck me was when my friend said "she says you gave her dignity...even when she used the commode, there was always a sense of dignity, decorum. She was very, very appreciative that you humanized her...because there's a time when you don't feel human."

Still makes me cry when I think how lucky were.

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My daughter Dolly is a real PIA....I can hear it now!

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My 95 year old mother tells my brother and me how blessed she is to have children who care for her. Yet when we try to get her to take her meds, she sings a gospel song about going up yonder. While it’s sad to watch the dementia take her down, we are grateful that she’s the same loving mother who sacrificed for us. And yes, candy is an issue.😄

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My mother has threatened to call APS because I wont give her a computer. I have one dedicated to her, not a chance she can turn on without me.

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My Dad would grumble that I: 1. don't let him drink as much beer as he wants.
2. I'm making him fat, after all, he's not use to eating so much since he moved in with me, (He's a light eater, don't you know... that toast and coffee breakfast that tides over to dinner is SO overrated...)
3. Why does he have to take so many pills, nothing's wrong with him...
4. I can still drive, I just can't see the street signs...
5. Is that how the remote works? I can't hear it - Vol 43...
6. If you don't study history, you're going to repeat it. I hope there isn't another world war...
7. The doctors all get rich off of me.

Just a nice thought, once we all get to Heaven, he'll be restored to his regular self and all this will be the lost memory.

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Mom already has a forum: anyone who'll listen. She says:

1. I stole her hearing aids.
2. I'm taking Caribbean cruises on her dime.
3. I won't let her talk when I take her to the doctor.
4. I don't do anything for her. I don't take her places.
5. I don't understand.
6. I have dementia.
7. I stole her car.
8. I stole her glasses.
9. I gave all her household things away.
10. The phone I provided her is defective.
11. I'm selfish, and she hopes I end up in memory care, too!

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So familiar...sure gets old doesn't it?

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My narcissistic father (who is a hoarder and lives in horrible conditions...his choice) loves to tell anyone who will listen what a horrible person I am. I have recently taken the tough love approach...."if you don't think you are getting what you need (care, attention...etc.)...then hire a professional care giver!" he has his mind - no dementia. He still pays his own bills...etc. He just uses me as his indentured servant. He thinks I owe him because I had the misfortune to have his sperm father me.

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She's mean! Move her out of my house!
( In fact I am having an ornery day and she just said that!)

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When my brother misses his old active life, he envies my comparative freedom and tells people, "My sister secretly loves scurrying all over town." (The truth is I'm naturally lazy---that person who lifts her feet so you can sweep under them.)
Oh, yes. At 10pm after a long workday, as I shop the Big Box store for men's sweatpants because all his pants disappeared into the black hole of the facility laundry, that's my first thought: I secretly love this. ;-)

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Somehow or another it is against the HIPPA laws to have a person's name on the outside of their clothing, but you can have your brother's first name or initials embroidered on the outside. This will insure your brother's sweatpants are not being used for other residents, b/c a gray pair of sweatpants is a gray pair of sweatpants. The missing clothing may not be in the laundry.

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10 yrs. I lived with and cared for my disabled Mom. I did everything for her from waking, bathing, dressing, all home cooked meals (5☆ w/ decorated plates), giving timely meds, doing laundry, cleaning, planted plants for Mom to tend to daily, taking her shopping, out for a bite or just the diner for coffee, & at times she just wanted to go for a ride (to go sight seeing), all weekly, Dr. & tests appts., entertain her guests, entertain Mom w/ doing crafts, baking, coloring, or to sit & watch movies she enjoyed, spent every holiday w/ Mom ( never knowing if it would be her last), show her daily pictures of her great grandkids & videos of her beautiful, funny nieces twins, read to her especially about all the newest medical treatments to help battle COPD, jump in bed with her to tell each other stories, & comforting her till she fell asleep as she was afraid of the dark. To be the first thing Mom would see as she woke in the morning.
I loved being with my Mom, spending all that time together & helping my Mom came naturally to me. Dont get me wrong at times it was so hard, its mentally & physically draining then I'd think back as far as I can remember it was my Mom who was always there for me & during my whole life all she has done for me.
I lived in the hospital w/ my Mom for a whole month, Mom telling the staff, every morning when I open my eyes my daughters the first thing I see, so I know every things gonna be ok. I tell you this because right before my Mom passed in the hospital she broke down hysterically crying thanking me for taking such good care of her. I was in my Moms arms when I was born, & my Mom was in my arms when God took her home. I Miss my Mom so.

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What would our loved ones say about us if they had a forum of their own?

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